I have Lyme disease

 

 

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There I’ve said it! This is something I’ve known for a little while but I wanted to take some time to adjust to and wrap my head around. Because whilst the diagnosis is new, in actuality I’ve had Lyme for 7 years now, all that time without knowing and all that time for it to ravage my body. Of course, that’s been hard to fathom. I’ve been a whole cataclysm of emotions, oddly relieved, sad and angry at times, questioning whether I have suffered unnecessarily but I wanted to write this post not out of anger but for education and awareness. Lyme is most certainly on the rise as the tick population increases. It’s also gaining more and more coverage in the media lately, with celebrities sharing their stories, most recently including Matt Dawson  and Shania Twain.

What’s more, I’m seeing so many people on my social media feeds attending festivals or camping and even doing park runs and in the back of my mind, I’m thinking these are prime locations to be bitten by a tick. And whilst I’m not trying to be the fun police because if there’s one thing all this has taught me it’s to squeeze the most out of life, but I do think that I have a responsibility to do my little bit to make more people aware of Lyme disease and what to do if they’re bitten.  To recognise the early signs of Lyme disease so that they can hopefully catch it early enough that hopefully, it doesn’t become debilitating. So what I thought I’d do is a little question and answer post about Lyme disease in general and share a little about my own case.

So let me start with:

What is Lyme disease?

Lyme disease is a bacterial infection most commonly passed on by being bitten by an infected tick, a small spider like insect, of which there are different kinds and varying in size; some can be as small as a pin head. It can also be passed on by being bitten by other infected insects such as mosquitoes and spiders too. It’s a spirochaetal bacteria from the genus Borrelia B. burgdorferi.

Why I decided to get tested for Lyme disease?

For me personally, I have always suspected something more might be behind my chronic illnesses, having been diagnosed with lesions in my brain matter before becoming debilitatingly unwell. Over the past 2 years or so I have come to find out more about Lyme and the more I read the more it resonated with what I was experiencing and why I continued to get sicker. I also recalled going to the doctors around 8 months or so before I became really unwell because of an infected and swollen face and being told that I’d been bitten. What followed was a series of weird symptoms, I found out about the lesions, my prolactin levels were through the roof, major anxiety, convulsions and then, of course, the complete shut down as it were, when I needed to be rushed to hospital fearing meningitis, with the onset of M.E. Obviously with hindsight I wish I could have connected the dots at the time but it’s not even something that would have crossed my mind. Over the past few years, I’ve also witnessed a number of people I know be tested and later diagnosed with Lyme, which really prompted me into getting tested and putting that nagging voice in the back of my head to rest. And so I decided to be tested privately alongside some other tests that weren’t available on the NHS in a bid to try and understand more about why I was becoming more and more unwell.

How do you get Lyme disease?

Like I said above, Lyme disease is transmitted by being bitten by a tick, or other insects. The tick then feeds on your blood, embedding itself into your skin and in turn, an infected tick will transmit bacteria from its stomach into you. There is much misinformation out there that you can only get Lyme if you have been in a forested area, where there are likely to be deer, however, there are many more species of tick than deer ticks and all of which are capable of harbouring the Lyme bacteria. Therefore you can contract Lyme in grasslands, country parks, urban parks and even in your own back garden. As many pet owners who have had to remove a tick (or have a vet remove it) from their pet can testify. You can find out in which areas of the UK infected ticks are most prevalent by using  The Big Tick Project’s tick risk map.

 What are the early signs I have Lyme?

The sign that most associate with Lyme is developing an Erythema Migrans rash, or a bullseye rash so called because of its distinct shape, forming around the bite as the surrounding skin becomes infected by the Lyme bacteria. Because this is unique to Lyme it is the only diagnostic that confirms Lyme disease without any lab work, although it’s likely they will also run blood tests too should you present with a bullseye rash, more on that in a bit. However, it’s important to know that not everyone that has Lyme or contracts Lyme in the future, gets the EM rash. Public Health England notes that around a third of patients will never develop the rash, which of course makes things a little more complicated. If you at least know that you have been bitten by a tick, by finding one embedded in your skin, then you’re at an advantage but just like with many patients not developing a rash, many don’t even know they’ve been bitten at all, which is why detection and being aware of high-risk areas can be really important.

So if you notice a tick(s) on your body or know that you have been in an area where ticks are more of a risk be sure to be mindful of the following symptoms:

  • Flu like symptoms (fatigue, fever, muscle aches, fever, chills, night sweats, swollen glands)
  • Headaches
  • Neck pain or stiffness
  • Joint pain

These are the most common symptoms however every patient is different, some may develop more serious symptoms instantly and others over time. Below is an info graphic of the many, many symptoms associated with Lyme, I’d list them but then we’d both be here all day!

 

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Patients that may not have noticed an EM rash, tick or bite but start to become chronically unwell over time with a range of symptoms from the infographic above are often misdiagnosed as having other illnesses such as M.E, chronic fatigue syndrome, fibromyaligia, MS, chronic migraines, Parkinsons, Dementia, autoimmune diseases, POTS, mental health problems.

I’ve been bitten by a tick (found a tick embedded in me) what should I do?

If you know you’ve been in an area that ticks are likely to be, say you’ve been out walking your dog in some woodland or fields, or you’ve been to a festival or your children have been playing outside then it’s really important to check yourself  (or your children and your pets) thoroughly including in your scalp. Remembering ticks can be as small as a pin head. Should you find a tick(s) then it’s really important that you remove it as soon as possible, however, it’s even more important that you remove it correctly. There is much misinformation out there about how to remove a tick, a few months back there was a Facebook post about using peppermint oil to remove a tick that went viral BUT PLEASE DON’T DO THAT. Nor burn it or remove it with your hands. This is important because by dousing the tick in something or burning it you risk the tick releasing the bacteria that are inside its stomach into your system and increase your chances of becoming severely unwell. Also trying to pull out the tick with your hands increases the risk of you not removing all of it and leaving the head inside you.

The correct way to remove a tick is:

Using a pair of fine pointed tweezers (not the flat or slanted ones you use to pluck your eyebrows) get them as close to your skin and the ticks head as possible and firmly pull straight up. Do not use a twisting method when using tweezers. 

Or there are tick removal tools like this one from Amazon that can also be purchased at your local vet’s which allow you to safely hook and twist the tick loose.

Should you have any problems removing it, or think part of the tick might still be stuck get to a doctor as soon as possible.

It is also recommended, if possible, that you keep the tick so that it can be tested for what infections it might be carrying.

Then should you develop a bullseye rash or start to feel gradually or suddenly unwell be sure to see a doctor as soon as possible.

How can I protect myself from tick bites?

Obviously, the best protection from ticks is to never go outside, or when you do only built up areas and not own any pets, however, that’s no way to live your life really. So, in reality, the best way to protect yourself from ticks is to be vigilant. If you know you’re going out walking, horse riding, or a park run or to a festival use an insect repellent with DEET in it and be prepared and have fine tipped tweezers or a tick removal tool with you. Wearing light coloured clothes can also help you to spot any loose ticks and wearing long trousers (with them tucked into your socks) and a long sleeved top affords you some extra protection if you are out walking in long grass or wooded areas.

I think I have Lyme, what should I do?

As above if you start feeling unwell after a tick bite or notice a bullseye rash get to see a doctor as soon as possible because the sooner it is caught and diagnosed the better. Note that having a blood test early on might not come back as positive because your body hasn’t yet produced the antibodies that the test uses to detect the presence of Lyme disease. Also be aware that the initial tests (ELISA) used by the NHS and other equivalents around the world have been known to produce a large number of false negatives, sadly meaning that many cases of Lyme disease go undetected and misdiagnosed.

If however, you have been unwell for a longer period of time, perhaps having been diagnosed with another illness but you can remember a bite or just have your suspicions it could be Lyme according to your ever increasing symptoms then again approach the subject with your doctor. Now, this is where it gets complicated because Lyme is still very much misunderstood and harder to be diagnosed in patients that have been sick for a long time.  You may need to be tested privately to help find your answer, usually having your blood samples sent off abroad and using tests with a higher degree of accuracy, which is what myself and others I know have had to do. I will link to some websites at the end of this post which explains testing and all its pitfalls in more detail.

What treatment is available?

Treating Lyme disease is complex and varies from person to person. The general consensus is that again the earlier it is caught the easier it is to treat, which is why detection and awareness are so important. Generally, you will be treated using antibiotics, which you may need a few courses of to help you improve. In patients who have had Lyme for a long time, it becomes harder to treat depending on how much damage it has done and which parts of the body it has affected. For example, you might need treatment for a heart condition, or fix problems with your autonomic nervous system and most will need to support their immune and gastrointestinal system. It’s like treating each and every part of the jigsaw puzzle and putting it all together for better overall well-being. What’s more, the bacteria doesn’t simply stay in your bloodstream, it’s stealthy and hides in your body tissues often presenting itself as diagnostic of other diseases such as MS, which further complicates the process. Treating Lyme, in particular, late stage Lyme is unfortunately not without its politics and so I will again link to some websites that can do a far better job of explaining everything with a greater amount of research.

What about co-infections?

Unfortunately, ticks do not just harbour Lyme disease but many other bacteria too and therefore if you are bitten by an infected tick it’s unlikely you’ll only contract Lyme disease but other illnesses too, which are known as co-infections. These include Babesia, Bartonella, Anaplasma, Ehrlichia, Q fever and many others. Again, these can make treatment and getting better all the more complicated as each requires targeted treatment plans.

At this stage, I’m unsure which co-infections I might have contracted because of finances but it’s certainly something I’m going to look into in future.

Do I still have M.E and fibromyalgia?

Yes, I very much still have a diagnosis of M.E and Fibromyalgia, along with POTS too, even with now having a Lyme diagnosis. It’s likely that in my case Lyme is the root cause of all these other illnesses. However, I just want to say that that is what is likely the case for me personally. I am not in anyway saying that everyone with a diagnosis of M.E, chronic fatigue syndrome, fibromyalgia or POTS has Lyme, or that these illnesses are therefore not real. They very much are debilitating illnesses in their own right and at present ones without a cure. And therefore I do not know whether I will make a full recovery.

Finally, I just want to say that obviously I’m not a doctor, nor do I profess to have more medical knowledge than one. I’ve done my research as best as I can to try and understand it, however, Lyme is still such a mindfuck for me because it’s so complex, especially when it comes to treatment and then there’s the politics. Below I’ve linked some reliable sources if you want to find out more about Lyme disease:

www.lymediseaseuk.com/

https://caudwelllyme.com/

I’ll also link to some friends blogs that also talk about Lyme disease and their personal journies with treatment:

Emma: Emma’s Looking Glass

Faye: Bear Hugs and Beyond

Donna: February Stars

Sophia: Spoonie Sophia

Jenny: Jenny helen My Spoonie Life

I hope this post has been informative and that it might help other’s to be more vigilant about checking for ticks.

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2 thoughts on “I have Lyme disease

  1. Thanks for this info. I’ve never been tested for Lyme but I got ill after clearly confirmed glandular fever in January so I’ve always been pretty confident that was the trigger for me.
    I tend to presume that Lyme is one of the many possible triggers for ME and POTS. I.e. There’s some initial external pathogen/infection that then sets in motion a pattern of chronic illness disability such as a Cell Danger Response, though the chronic illness disability is not the infection itself (although with Lyme and EBV there could also be ongoing problems directly to do with the infection not clearing too). Does this fit your experience?

    Like

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